Tonsil Cancer
Comments
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this is why we are here
First of all this site is the site you want for answering questions, venting and gathering information. You can share or ask anything and nobody will be bothered at all.
- those around you want to help, they care and love you. how your reacting is very much the normal we all went thru to some degree
- we here have been given the challenge and accepted it, to put it bluntly we kicked Cancer's **** big.
- so that being said keep in mind it is not bad until it is bad. you will find read on this site that doctor's can not tell by looking other wise they would not do more tests. scans can not prove it can only give you enhanced area's. the biopsy with enough material can tell you it's cancer.
- benign means it is not cancer
- says some prayers and let the lord carry you and he will
- if your going to doctor take at least one person with you or two. when it's good news you celebrate, if it's bad you will have support and love there and they can help remember what the doctor says
- accept help and support... they have not been where your at, they do not know how to act or say to help you.... the most important is they are there with you or take the time to call you and show they care.
- Maintain a positive attitude that it will be fine and it will be.
hope at least one of these thoughts and suggestion will help.
Hugs
John0 -
Welcome Heavenleah
Welcome, you couldn't have found a better place for your situation. Hoping it's not cancer, and don't want to scare you...but the questions you are asking pretty much sounds like you know the outcome.
Your initial experience is almost identical to mine. Only my ENT was pretty much 100% sure it was cancer. More specifically squamous-cell cancinoma ~ SCC, and since I was a non tobacco user more than likely from HPV (which upon biopsy, it was and he was 100% correct).
That was on Friday January 2, 2009 after dealing with your similar symptoms since October 2008... The following Monday January 5, 2009 he took my tonsils out. I also had a lymhnode pop up on the same side between October and January.
Next I had a port installed for the chemo induction which came next....
Again, not trying to scare you, but if it is diagnosed, this is a brief overview of my Dx, and treatment.
Tonsil (primary) Cancer STGIII SCC HPV+ and a lymphnode (secondary)...
Nine weeks chemo (three week cycles)
Cisplatin
Taxotere
5FU
Concurrent chemo/rads
Carboplatin - seven weekly
Amifostine - 35 daily
Radiation - 35 daily
It turns out that HPV is becoming one of the leading causes of head and neck cancer. Especially in those that aren't tobacco related.
I finished all of that up Jun 2009 and all scans have been clean and clear todate.
I'm hoping that you don't have to go through this, but if you do...it's a very treatable and curable cancer these days....definitely not easy, but very doable.
Everyone is different as are you, we all treat and heal differently.... There is a lot more invlved, but that's the major points....if and when you are definitely diagnosed there are many here that have went through similar and are always willing to help...usually anythime day or night.
Thoughts and Prayers,
John0 -
Thank you so much, John.fisrpotpe said:this is why we are here
First of all this site is the site you want for answering questions, venting and gathering information. You can share or ask anything and nobody will be bothered at all.
- those around you want to help, they care and love you. how your reacting is very much the normal we all went thru to some degree
- we here have been given the challenge and accepted it, to put it bluntly we kicked Cancer's **** big.
- so that being said keep in mind it is not bad until it is bad. you will find read on this site that doctor's can not tell by looking other wise they would not do more tests. scans can not prove it can only give you enhanced area's. the biopsy with enough material can tell you it's cancer.
- benign means it is not cancer
- says some prayers and let the lord carry you and he will
- if your going to doctor take at least one person with you or two. when it's good news you celebrate, if it's bad you will have support and love there and they can help remember what the doctor says
- accept help and support... they have not been where your at, they do not know how to act or say to help you.... the most important is they are there with you or take the time to call you and show they care.
- Maintain a positive attitude that it will be fine and it will be.
hope at least one of these thoughts and suggestion will help.
Hugs
John
Thank you so much, John. You had some most reassuring things to say. I havent had anyone go with me to my appointments, thinking up to now that it was going to be great news. I will start taking someone with me, as I know that I didnt really hear half of what he said.
Im glad to know benign means no cancer. That helps a ton! Just knowing there are people willing to listen and help means so much. I appreciate you. I dont know how to get rid of this anger i feel right now
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I just went through a bout of Tonsil Cancer
Heavenleah, I had a persistent sore throat from mid-summer 2010 to about Oct when I finally had a physical. The Dr. did some treatments but it persisted. Finally got a referall to an ENT who first did a small scope and found a spot on my right tonsil. Two days later he did a laryngoscopy and biopsied what he found. Turned out cancerous but it was caught early and, after a CT/PET scan it had not spread anywhere. On Mar 1st of this year another ENT did a "tonsillectomy times 10" (his words) and cut a tumor out of the right side of my tongue and my right tonsil. He had hoped it would get all the cancerous cells but it didn't so on Apr 11th I started a regimen of 33 rad treatments.
I tell you that because yes, the waiting is tough. I remember asking the original ENT if it could be cancerous and he said that he supposed so. I just knew that it was - a gut feeling I guess. Anyhow, I was driving down the road and he called me to tell me it was cancer. I'd like to think my faith in God is pretty strong. I had prayed that whatever happened that I just not sink to the level of anger where I get angry at Him and that I accept whatever it may be. Ever since I've had a very peaceful feeling about the whole thing. I am now seven weeks post rad treatment. I've not had any substantial solid food since Feb 28th. I just made baked chicken for our kids and watched in envy as they tore into it.
My advice is to put complete trust in God. Now, if your gut tells you to get a second opinion then by all means do so but once you are comfortable with the diagnosis then in my opinion you have to put complete trust in your doctors. Second guessing them will likely drive you crazy. If you go the tonsillectomy route followed by radiation and/or chemo, just understand you will have likely have a rough row to hoe but you can most certainly handle it. If you do radiation and it begins to make your throat sore and you develop sores in there then ask for what my doctor called Mary's Magic - I'm certain there are variations of names but it essentially is a numbing agent that does allow you to drink the Ensures and such. Many folks get a feeding tube and swear by it. I didn't get one but I don't know why. I've lost 36 pounds but then again I had it to lose.
I'll keep you in my prayers here in Kentucky but I have faith that you will be fine when it is all said and done.0 -
Hey, KentuckyKDDavis said:I just went through a bout of Tonsil Cancer
Heavenleah, I had a persistent sore throat from mid-summer 2010 to about Oct when I finally had a physical. The Dr. did some treatments but it persisted. Finally got a referall to an ENT who first did a small scope and found a spot on my right tonsil. Two days later he did a laryngoscopy and biopsied what he found. Turned out cancerous but it was caught early and, after a CT/PET scan it had not spread anywhere. On Mar 1st of this year another ENT did a "tonsillectomy times 10" (his words) and cut a tumor out of the right side of my tongue and my right tonsil. He had hoped it would get all the cancerous cells but it didn't so on Apr 11th I started a regimen of 33 rad treatments.
I tell you that because yes, the waiting is tough. I remember asking the original ENT if it could be cancerous and he said that he supposed so. I just knew that it was - a gut feeling I guess. Anyhow, I was driving down the road and he called me to tell me it was cancer. I'd like to think my faith in God is pretty strong. I had prayed that whatever happened that I just not sink to the level of anger where I get angry at Him and that I accept whatever it may be. Ever since I've had a very peaceful feeling about the whole thing. I am now seven weeks post rad treatment. I've not had any substantial solid food since Feb 28th. I just made baked chicken for our kids and watched in envy as they tore into it.
My advice is to put complete trust in God. Now, if your gut tells you to get a second opinion then by all means do so but once you are comfortable with the diagnosis then in my opinion you have to put complete trust in your doctors. Second guessing them will likely drive you crazy. If you go the tonsillectomy route followed by radiation and/or chemo, just understand you will have likely have a rough row to hoe but you can most certainly handle it. If you do radiation and it begins to make your throat sore and you develop sores in there then ask for what my doctor called Mary's Magic - I'm certain there are variations of names but it essentially is a numbing agent that does allow you to drink the Ensures and such. Many folks get a feeding tube and swear by it. I didn't get one but I don't know why. I've lost 36 pounds but then again I had it to lose.
I'll keep you in my prayers here in Kentucky but I have faith that you will be fine when it is all said and done.
KD - I'm in the north of Ky - near Covington and Florence.0 -
Don't Blame You For Being Scared
I was, too. Like you, a lot of us here were initially sent home with antibiotics for our "infection". Hoping those close to you have it right, and you've got some sort of benign mass. If not, know that even though treatment is no one's idea of a good time, you can make it through - look at how many of us post here. My cancer wasn't in the tonsil, it was base of tongue - they did do a tonsillectomy on me, though when they did my open biopsies (needed more info than they got from the fine needle aspiration). Keep us updated.0 -
Hang in there.....
Hi HeavenLeah,
Take a deep breath and one day at a time. To add to John’s advice, get a notebook and write down everything. Take it to your appointments, get copies of things and this will help you have control of throughout this journey.
I’m a caregiver for my partner Mike (53, smoker). Here is a brief summary of our journey:
Feb ’10: he noticed a lymph node on his next and took antibiotics for “an infection”. Didn’t get better, went back to docs, had a CT scan, off to ENT and they did a Fine Needle Aspirate (twice) which was indeterminate/inconclusive. Changed ENT doc and new ENT doc said the CT was cancer. Had a PET scan and confirmed tonsil was the most likely primary
19Mar: Neck dissection/tonsillectomy and confirmed Stage 4a tonsil cancer. (quit smoking)
Three cycles of chemo: cisplatin
8 weeks of radiation
He finished all treatments 17Jun2010. He’s had 3 clean PET scans and doing great.
Although I don’t talk /post much on this discussion board, I’m proud and honored to read each and every post. The strength and perseverance these members show is amazing. Just know by joining this network, know you are in a great place to receive support, advice and build new friendships. I promise you the members on this board are there for you and no question is stupid.
Just remember not to be afraid to ask questions and don’t worry about hurting other peoples (doctors) feelings. You deserve the best treatment and if you don’t feel you are getting it, move on.
Our thoughts and prayers are with you as you navigate through this journey,you will get through it!!
God Bless
Chris/Mike0 -
Just wanted to welcome you.CLRRN said:Hang in there.....
Hi HeavenLeah,
Take a deep breath and one day at a time. To add to John’s advice, get a notebook and write down everything. Take it to your appointments, get copies of things and this will help you have control of throughout this journey.
I’m a caregiver for my partner Mike (53, smoker). Here is a brief summary of our journey:
Feb ’10: he noticed a lymph node on his next and took antibiotics for “an infection”. Didn’t get better, went back to docs, had a CT scan, off to ENT and they did a Fine Needle Aspirate (twice) which was indeterminate/inconclusive. Changed ENT doc and new ENT doc said the CT was cancer. Had a PET scan and confirmed tonsil was the most likely primary
19Mar: Neck dissection/tonsillectomy and confirmed Stage 4a tonsil cancer. (quit smoking)
Three cycles of chemo: cisplatin
8 weeks of radiation
He finished all treatments 17Jun2010. He’s had 3 clean PET scans and doing great.
Although I don’t talk /post much on this discussion board, I’m proud and honored to read each and every post. The strength and perseverance these members show is amazing. Just know by joining this network, know you are in a great place to receive support, advice and build new friendships. I promise you the members on this board are there for you and no question is stupid.
Just remember not to be afraid to ask questions and don’t worry about hurting other peoples (doctors) feelings. You deserve the best treatment and if you don’t feel you are getting it, move on.
Our thoughts and prayers are with you as you navigate through this journey,you will get through it!!
God Bless
Chris/Mike
I am not going to add much to what has been already said, but I did want you to know that there are many of us that are still here and still kicking, after some hard diagnoses. I had SCC unknown primary, stage 4. I found just a swollen lymph node in 10/08. Modified radical neck dissection 1/09 then 30 rads from 4/6 - 5/16/09. Been out of treatment over two years now.0 -
the big "c" word...
I can totaly understand the zoning out when they said the c word thing...
It's a normal reaction and it is pretty common, thats why you need someone to go with you to help catch what all the doctor tells you, it will be important to you later.
First off, If... It is cancer, dont write yourself off just yet.
Not to minimize cancer in any way but This is VERY treatable and VERY survivable.
hang out here as much as you can,Ask lots of questions and you'll see what i am talking about.
I am a survivor of tonsil cancer left side, it was stage 4 and had spread into the soft palate and lower part of the sinus. so i had 35 rads, 3 chemos and a
lymph node-ectomy (is that a word?) to remove about a dozen nodes just in case. and all the nodes were negative. i was diagnosed in late october of 2010, radiation and chemo in late dec2010- feb2011. neck surgery in march 2011. It may be a little early to claim that i am cured but, in all probability, i am.
Tonyb.0 -
vividly familiartonyb said:the big "c" word...
I can totaly understand the zoning out when they said the c word thing...
It's a normal reaction and it is pretty common, thats why you need someone to go with you to help catch what all the doctor tells you, it will be important to you later.
First off, If... It is cancer, dont write yourself off just yet.
Not to minimize cancer in any way but This is VERY treatable and VERY survivable.
hang out here as much as you can,Ask lots of questions and you'll see what i am talking about.
I am a survivor of tonsil cancer left side, it was stage 4 and had spread into the soft palate and lower part of the sinus. so i had 35 rads, 3 chemos and a
lymph node-ectomy (is that a word?) to remove about a dozen nodes just in case. and all the nodes were negative. i was diagnosed in late october of 2010, radiation and chemo in late dec2010- feb2011. neck surgery in march 2011. It may be a little early to claim that i am cured but, in all probability, i am.
Tonyb.
your story is vividly familiar as it was a very similar situation my mother was in 9 months ago. as i can recall what a scary and hectic time it was in the beginning.. my best advice to you right now is two things .. 1) get organized now and 2) find yourself a doctor you trust and who specializes in cancer.
get yourself a notebook to keep track of doctors appointments and the things they tell you. write down questions you think of . get COPIES of any scans, biopsies, labs etc. get the ACTAUL CD should you need or want to go to another doctor.
find yourself a doctor you like and trust, and one who specializes in cancer. our family ENT doctor waited to long to send us to the specialist in my opinion.
this board is a wonderful source of information and support. however the people on here do have a diagnosis of cancer or a loved one with cancer. you need to get the exact diagnosis. that is your next step. a CT scan and a biopsy or aspiration do appear to be the appropriate next step. take it one step at a time and try not to get too overwhelmed as difficult as that may sound.
waiting can be the most difficult part. tell your doctor that you are worried and discuss the best way to get the results to you as soon as possible.
keep us updated and let us know your progress. we can help guide and support you along the way. there is a tremendous amount of support and information here which has made such an impact on me and my mother ( should you need the information here)
prayers and thoughts for you and your family0 -
Thank you so muchbpell0402 said:vividly familiar
your story is vividly familiar as it was a very similar situation my mother was in 9 months ago. as i can recall what a scary and hectic time it was in the beginning.. my best advice to you right now is two things .. 1) get organized now and 2) find yourself a doctor you trust and who specializes in cancer.
get yourself a notebook to keep track of doctors appointments and the things they tell you. write down questions you think of . get COPIES of any scans, biopsies, labs etc. get the ACTAUL CD should you need or want to go to another doctor.
find yourself a doctor you like and trust, and one who specializes in cancer. our family ENT doctor waited to long to send us to the specialist in my opinion.
this board is a wonderful source of information and support. however the people on here do have a diagnosis of cancer or a loved one with cancer. you need to get the exact diagnosis. that is your next step. a CT scan and a biopsy or aspiration do appear to be the appropriate next step. take it one step at a time and try not to get too overwhelmed as difficult as that may sound.
waiting can be the most difficult part. tell your doctor that you are worried and discuss the best way to get the results to you as soon as possible.
keep us updated and let us know your progress. we can help guide and support you along the way. there is a tremendous amount of support and information here which has made such an impact on me and my mother ( should you need the information here)
prayers and thoughts for you and your family
I want to first and foremost say thank you to everyone out there who have replied with inspirational feedback. It helps more than I can express to talk to people who have been through what I am going through now.
I saw the ENT on Wednesday, who then told me he is pretty certain its cancer, as Ive said. He put in the order for the Needle Aspiration. Now my insurance is in hang up, waiting to get approved for that procedure. I have to wait until next Friday the 22nd to get that done, then wait until the following wednesday to get the results. I have a feeling this is going to be the longest week and a half of my life!
Not only am I waiting now to get the test done, I woke up this morning with difficulty swallowing even just water and my voice is very strained. I work from home for the telephone company and talk all day long on the telephone to customers, and its just getting worse as the day goes on. I have no vacation time left this year as I already had 2 surgeries in the beginning of the year for my gallbladder. So I cannot even take a day off from work with my voice and inability to swallow as it would be unpaid. I feel like the world is spinning and even with words of encouragement, I feel lost. My family is so very far away, and Im trying to appear strong for my children and husband, but I feel Im going to break very soon. And for icing on the cake, my ENT dr is out of town until Monday, so I cant even get any help or suggestions for my voice and swallowing issues. I dont know what can help. I just sent my husband out for hot tea with lemon, hoping that might do the trick, but I just dont know.
Im so sorry for ranting on and on. But I really just dont have anyone to talk to.
Thank you for listening,
Jenn0 -
Aww, it's scary when youHeavenleah said:Thank you so much
I want to first and foremost say thank you to everyone out there who have replied with inspirational feedback. It helps more than I can express to talk to people who have been through what I am going through now.
I saw the ENT on Wednesday, who then told me he is pretty certain its cancer, as Ive said. He put in the order for the Needle Aspiration. Now my insurance is in hang up, waiting to get approved for that procedure. I have to wait until next Friday the 22nd to get that done, then wait until the following wednesday to get the results. I have a feeling this is going to be the longest week and a half of my life!
Not only am I waiting now to get the test done, I woke up this morning with difficulty swallowing even just water and my voice is very strained. I work from home for the telephone company and talk all day long on the telephone to customers, and its just getting worse as the day goes on. I have no vacation time left this year as I already had 2 surgeries in the beginning of the year for my gallbladder. So I cannot even take a day off from work with my voice and inability to swallow as it would be unpaid. I feel like the world is spinning and even with words of encouragement, I feel lost. My family is so very far away, and Im trying to appear strong for my children and husband, but I feel Im going to break very soon. And for icing on the cake, my ENT dr is out of town until Monday, so I cant even get any help or suggestions for my voice and swallowing issues. I dont know what can help. I just sent my husband out for hot tea with lemon, hoping that might do the trick, but I just dont know.
Im so sorry for ranting on and on. But I really just dont have anyone to talk to.
Thank you for listening,
Jenn
Aww, it's scary when you cannot swallow. I am not sure if this would help you, but you could try the baking soda, salt and water gargle if it's painful and irritated. Not sure if that would help with swelling, but they have us use it through radiation, and it couldn't hurt you.
It's a tsp of baking soda, tsp of salt in a pint of water.0 -
thanks!sweetblood22 said:Aww, it's scary when you
Aww, it's scary when you cannot swallow. I am not sure if this would help you, but you could try the baking soda, salt and water gargle if it's painful and irritated. Not sure if that would help with swelling, but they have us use it through radiation, and it couldn't hurt you.
It's a tsp of baking soda, tsp of salt in a pint of water.
I will try that now! The hot tea doesnt seem to be working, and is almost harder to swallow than ice water, probably because its hot.. lol0 -
H2O2sweetblood22 said:Aww, it's scary when you
Aww, it's scary when you cannot swallow. I am not sure if this would help you, but you could try the baking soda, salt and water gargle if it's painful and irritated. Not sure if that would help with swelling, but they have us use it through radiation, and it couldn't hurt you.
It's a tsp of baking soda, tsp of salt in a pint of water.
Or hydrogen peroxide instead of salt is what I used....
Hang in there, sorry you have to go that route just for a needle biopsy. If your insurance is that regid, maybe once diagnosed for sure your MD can intervene enough to have some flexibility scheduling procedures...
You might try honey also with the warm tea....
Best,
John0 -
I hope so, thanks. Im notSkiffin16 said:H2O2
Or hydrogen peroxide instead of salt is what I used....
Hang in there, sorry you have to go that route just for a needle biopsy. If your insurance is that regid, maybe once diagnosed for sure your MD can intervene enough to have some flexibility scheduling procedures...
You might try honey also with the warm tea....
Best,
John
I hope so, thanks. Im not sure why insurance is being so weird about it. Not like people randomly voluntarily say "hey I want to have a biopsy" and just go do it. Its only issued if its needed so I dont see what the problem is there...0 -
we had some insurance delays...Heavenleah said:I hope so, thanks. Im not
I hope so, thanks. Im not sure why insurance is being so weird about it. Not like people randomly voluntarily say "hey I want to have a biopsy" and just go do it. Its only issued if its needed so I dont see what the problem is there...
purely just authorizing and paper work things. nothing that interefered with getting treatment or tests. my mother had a swollen lymph node in novemember.. and i dont think we got an officialy diagnosis until january. waiting game sucks.
but we are here to talk to you and support you. there is also a chat room ( link to your left) that i found particulrly useful in the beginning when i needed instant support.
my mom drank aloe, it soothed her mouth sores and sore throat. there is a thick gel version which helped best because it "coated"0 -
oh boy, boss just calls mebpell0402 said:we had some insurance delays...
purely just authorizing and paper work things. nothing that interefered with getting treatment or tests. my mother had a swollen lymph node in novemember.. and i dont think we got an officialy diagnosis until january. waiting game sucks.
but we are here to talk to you and support you. there is also a chat room ( link to your left) that i found particulrly useful in the beginning when i needed instant support.
my mom drank aloe, it soothed her mouth sores and sore throat. there is a thick gel version which helped best because it "coated"
oh boy, boss just calls me and tells me that he cant approve anymore time off for me since im out of vacation time. I will need to work early and stay late on days i have appointments, and/or treatments. I know mama always said "Life aint fair" but come on now, this is getting ridiculous.0 -
My boss and company were idiots.Heavenleah said:oh boy, boss just calls me
oh boy, boss just calls me and tells me that he cant approve anymore time off for me since im out of vacation time. I will need to work early and stay late on days i have appointments, and/or treatments. I know mama always said "Life aint fair" but come on now, this is getting ridiculous.
Honestly, these bosses and companies that act like this to their employees who are legitimately so ill, nauseate me. All I can say is they better watch out for karma, because it will catch up to them eventually. Meanwhile, do what ever you need to do to put your health first, though. I am hoping that the insurance delays get sorted too. I have to say that when I had my insurance, I didn't have any real issues with that.0 -
FMLA ~ HeavenleahHeavenleah said:oh boy, boss just calls me
oh boy, boss just calls me and tells me that he cant approve anymore time off for me since im out of vacation time. I will need to work early and stay late on days i have appointments, and/or treatments. I know mama always said "Life aint fair" but come on now, this is getting ridiculous.
Make sure that you get signed up for FMLA, it's your right and protection....
John0
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